Data Sharing

Data standards and data sharing are important tenets of the NHDR. To that end, all data obtained for the NHDR are considered common data elements (CDEs) important for studies of SCD. These CDEs were identified from several workgroups of SCD experts convened under the NHLBI's CureSC Initiative (https://cde.curesickle.org/datatools-overview). Data collected using the same CDEs is instantly compatible, minimizing the cost and other challenges of data harmonization.

The data from the NHDR is uploaded to BioData Catalyst annually in January and can be found by searching the BDC platforms for "SCD NHDR".

The following types of data were abstracted from the medical record:

variables that describe the SCD diagnosis
SCD co-morbidities and other clinical complications
elements from the physical examination
medications and transfusions
insurance type
laboratory measurements
healthcare utilization
history of SCD-related procedures
measurements from cardiac procedures

The following types of data were self-reported on the patient survey, many of which used the standard PRO measures from ASCQ-Me, PROMIS and Neuro-QoL:

demographics
diagnosis information
pain experience
social and mental health information
other patient reported outcome domains (e.g., sleep, fatigue)
alcohol and smoking history

Apply for data access in dbGaP: Sickle Cell Disease Natural History Data Resource (SCD NHDR)

Upon approval, users may begin accessing requested data in BDC.

Instructions for requesting individual-level data https://biodatacatalyst.nhlbi.nih.gov/resources/data/

For questions about availability, contact the BDC team https://biodatacatalyst.nhlbi.nih.gov/contact